Self-Advocacy: Getting Ready to Start

Getting Your Health Care Covered

You may never need to file for disability, but for simplicity we present these options in terms of pre- and post-disability. Disability is a formal claim that must be made with your doctor and approved by Social Security. To find programs you may be eligible for, it's important to consult local resources such as benefits counselors, case managers, social workers or attorneys as programs differ greatly from state to state.

If You Haven't Filed for Disability

Group insurance through your employer
If your employer covers health care, the insurance company must cover you even if you have a pre-existing condition like HIV. There are three types of plans: fee-for-service, preferred provider organizations (PPOs), and health maintenance organizations (HMOs). Plans vary in what they offer, their fees and your choice of doctors. Choose a plan that is best for you, and check your plan for HIV-experienced doctors.

COBRA
If you leave work due to a layoff and had insurance, then you should be offered a continuation policy called COBRA, which is meant to sustain you until you get other insurance.

Individual private insurance
Individual plans are an option, but few people with HIV can purchase them due to high cost and restrictions on preexisting conditions. If you had coverage before your HIV diagnosis, it's likely most or everything you need will be covered. However, out-of-pocket expenses may be high.

High-risk insurance pools
This program covers people who can't get insurance due to pre-existing conditions and operates in 36 states. In addition, under health care reform each state has a Pre-existing Condition Insurance Program (PCIP) in place until 2014 when the large coverage expansions will occur.

Federal Ryan White Program
Ryan White funds a broad range of HIV services in states and localities, depending on their unique needs. It's intended to help under- or uninsured people. If you have insurance, you may get help with premiums or other out-of-pocket costs. If you don't have insurance, your state program may help you purchase it. You may also get free or very low cost care through HIV clinics and the AIDS Drug Assistance Program (ADAP). Ryan White may also fund dental and vision care. Check with your state AIDS program or ASO to see if a Ryan White program can help you.

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If You Have an Approved Disability Claim

COBRA
If you leave work due to disability and had insurance, you'll be offered COBRA until you can get other insurance like Medicare. Coverage is often expensive. Check with a local ASO or state AIDS office for programs to help with out-of-pocket costs.

Medicaid
Most people with HIV qualify for Medicaid through its disability category, although some women with children can qualify through a different program. Nearly all states require a disability claim, income and assets below a certain level to qualify. Several states offer Medicaid to all childless adults (AZ, DE, HI, MA, NY and VT), while several others offer some benefits. States vary greatly in what they cover and who qualifies.

Medicare (www.medicare.gov)
If you have held a job, you'll likely qualify for Medicare. However, you must wait 29 months after your disability claim, during which you may be able to get your health care through COBRA, Ryan White or Medicaid.

Other Possible Sources of Help

Patient assistance programs (PAPs)
PAPs are run by HIV drug makers to supply meds to people who are under- or uninsured. They differ widely in eligibility. These are not ideal for the long-term but can help in the short-term or in an emergency.

Veterans Administration (www.hiv.va.gov)
If you're a veteran or family member, you're eligible for care through the VA. VA sites are only found in some areas and vary in their ability to provide HIV care. As a veteran, you can access Ryan White programs, but if your VA facility is accessible and offers quality HIV care, it may be a good option.

Is Your Doctor Experienced in Treating HIV?

You will need to find a doctor who's able and willing to treat HIV, ideally one who already has experience with HIV. Depending on how and where you get health care, you may not have many choices.

Experienced doctors usually keep up with recent developments in treating HIV. They also have a better sense of preventive health care. If you can, it's also important to find other doctors like gynecologists, eye doctors and dentists who have HIV experience.

Doctors with less or no HIV experience may need to consult resources that can help them provide the best medical care for you. Resources are available that can help you and your doctor make informed decisions.

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